Patients with inflammatory disease face worsening symptoms

When people complain of an aching back, they often receive this reply: "Take a rest, and you will feel better."

But one group of patients experience backache almost every day, and their symptoms worsen every time they lie down to rest. Some of them feel so much pain every morning that they need to roll to one side to push themselves up.

These patients have the inflammatory disease ankylosing spondylitis, or AS, which over time can cause some bones in the spine to fuse.

Medical professionals who have witnessed more people, especially young patients, developing the disease in recent years have called for more attention to be paid to it.

The name ankylosing spondylitis derives from a typical symptom of the disease, in which a patient's backbone loses flexibility.

Zhang Lu, a senior doctor treating immunity-related diseases at China-Japan Friendship Hospital in Beijing, said it is easy to test the spine's flexibility by using this method: Stand up, keep the legs straight, then lower the upper body, as if trying to touch the toes.

This test shows that AS patients typically find bending much harder than those who do not have the disease.

A 40-year-old patient surnamed Liu, who is being treated for AS at China-Japan Friendship Hospital, said he could not bend down to unlock the door to his office.

"If I was the first to arrive at the office, I had to stand there and wait. To avoid embarrassment, I sometimes walked to the restroom to hide until a colleague turned up. I usually greeted the colleague by pretending that I had just arrived. Many of my workmates asked why I always emerged from the restroom when they arrived at the office," Liu said.

The majority of AS patients experiencing constant backache can only bend their spines at a certain angle to slightly lessen the pain, which results in them developing a hunched back.

A vicious circle forms in this way, as the more pain patients feel, the more they crook their back, which in turn leads to their spines becoming fixed at a crooked angle.

In June 2020, Li Hua, 46, passed a clinical test after being treated for AS at Shenzhen University General Hospital in Guangdong province.

Tao Huiren, a senior doctor with 31 years' experience at this hospital, who led the team treating Li, said the patient's back was so severely crooked it looked as if he had been folded twice into three parts.

Li had been an inpatient at the hospital for more than a year, during which he underwent four major surgeries.

His spine was opened and "refurbished", his hip joints removed and replaced with artificial ones, and his legs were also treated.

The last of the four operations took four hours, and the first thing Li did after he recovered was to visit the coast to fulfill his long-held dream of getting a glimpse of the sea.

Li first experienced AS symptoms in 1994, when he was 18. After feeling pain in his legs, his mother told him to take a rest, but this only deepened his pain, which gradually extended to his spine and other areas of the body.

As traveling was not as easy in the 1990s as it is today, he had little chance of receiving the proper treatment at a leading hospital to reduce his pain.

Every time he was in pain, Li bent his back a little. He bent it so much for the past 10 years that he was unable to see the sky again until after he had surgery.

Often too late

Li's case is typical among AS patients, most of whom are relatively young. According to a survey of 200 patients carried out by Shengjing Hospital Affiliated to China Medical University in Shenyang, Liaoning province, from 2016 to 2020, the average age of male patients who first experience AS symptoms is 25. For female patients, it is 28.

Zhang, from China-Japan Friendship Hospital, said, "Many patients in their 20s are in such good health that they care little about the pain, but when they see a doctor, it is often too late to help them."

Liu, the office worker, was diagnosed with AS in 2006, when he was 24, but his doctor said that based on what Liu told him, the patient might have had AS for five years by that time.

Li Yuchun, 38, a popular singer, said in a series of recent interviews conducted by Tencent that she was diagnosed with AS in 2020. "I could not lie down to sleep … this was a big problem, as I love sleeping so much," she said.

One of the songs on her new album released this month calls for more support for AS patients in their fight against the disease.

Zhang Jiayi, 52, a popular movie and television actor who reportedly has AS sometimes experience great pain getting out of bed in the morning.

Immunity error

As far back as 400 BC, the renowned ancient Greek doctor Hippocrates recorded a disease in which the patient experienced spinal pain — much like the symptoms of AS today.

But it was not until the 1950s that doctors identified the cause of AS as immunity error, where the immune system attacks some parts of the body after incorrectly identifying them.

In 1963, the International League of Associations for Rheumatology named the disease ankylosing spondylitis, and 19 years later, an academic conference on rheumatology in China accepted this as the formal name for AS.

Zhang, the doctor, said immunity error partly explains why many patients feel more pain in the mornings than at other times of the day. "The human immune system tends to be active during sleep at night," she added.

"This is good news for those with injuries, bacterial or viral infections, because the immune cells fight these conditions more efficiently after a good night's sleep — but not for AS patients."

Hip joints, the spine and certain chest joints commonly fall victim to AS. The disease initially causes inflammation similar to a bacterial infection, but if a doctor takes a sample from the point of inflammation to check it, he or she won't detect any bacteria.

The inflammation could ease after a few days, and the patient may feel the pain lessening a little, but it will return and cause inflammation again. This results in a joint becoming locked, Zhang Lu said.

Wrong department

Many patients visit a hospital orthopedic department to seek help when they experience pain from AS.

However, Wei Xing, a senior doctor and director of the orthopedic department at Aerospace Center Hospital in Beijing, said such departments are not the right place for patients to head for.

They should visit the rheumatology and immunity department, as bone joints are just one of the victims of AS, which causes pain throughout the body, Wei said.

Tao Yong, a senior doctor and director of the ophthalmology department at Beijing Chaoyang Hospital Affiliated to Capital Medical University, said AS also causes inflammation in the eyeballs, which leads to pain and damage known in medical terms as uveitis.

Some 20 percent of AS patients experience uveitis, which can occur repeatedly if not handled properly, damaging eyesight and possibly causing blindness. Uveitis is the second-largest cause of blindness in China after cataracts, Tao said.

AS also damages the lungs and causes tissues to become fiberlike. A patient's entire chest could be restricted in movement, causing difficulty in breathing.

Since the 1970s, the anti-inflammatory agent Sulfasalazine has been used to fight AS by making the immune system less active, thus reducing attacks on parts of the body triggered by incorrect identification.

In the 21st century, treatments such as monoclonal antibodies have been developed, which are more effective in controlling the immune system via injection. However, in this way, the drugs also largely prevent the immune system doing its job of clearing bacteria, viruses and cancer cells from the body.

As a result, patients receiving this treatment face a higher risk of infection and cancer, which means that they need to stay more alert to the risk of diseases.

Zhang, the medic, said the ultimate solution lies in genetic treatment.

"Humankind has already analyzed genetic groups and identified the gene that increases the risk of AS. Research is now being carried out on genetic treatment to prevent such diseases from occurring right from the start," she added.

Tao said this action will solve more medical problems than just AS, adding, "I hope that genetic therapy provides a solution for all congenitally-caused diseases."